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Trying to arrange social care package

HelenD001HelenD001 Posts: 5Member Listener
edited February 8 in Disabled people
Hi I am new to this group. I was given your details by a friend and am so happy to have found this site..
My name is Helen. I am 56 and am housebound.

I had been waiting over 3 years to get my first hip replacement which I finally had end of last October and last June I found out my other hip also needs replacing so altbough i have had one hip done I am still not able to walk without 2 crutches and am just about as disabled as I was before so until I get my other hip I am still housebound.

I have been trying to get social care and a social care package set up since I was referred by an OT to adult social services as a vulnerable person in October 2016. The last care I did receive was in May 2018 when the council's own MCAS team ended my care so that I could set up a direct payment scheme and employ a P.A.

Long story short....I was paying a cleaner from a Care Agency to come weekly and she reported back to her employers that she was worried about me not getting any other help despite being disabled and not managing to eat properly or look after myself etc.
They rang social services and lo and behold my social worker and a person from the council's social care dept turned up last week and I had a phone call yesterday making an appt for this afternoon and she came with a lady from a local care agency and they are starting my direct payment care package up immediately and from next Monday I will have a carer coming to me regularly! 

I joined this site to ask for help in trying to get my social care package set up after being assessed and allocated a Care package in 2016 and unable to get any direct payment scheme set up with a Care Agency or a P.A. through the council as both social workers I had been appointed failed to contact me for more than 3 months at a time to provide me with the information and help I had asked for and needed so that I could set the direct payment scheme up and get the help and care I need. 

I have osteo arthritis and fibromyalgia and joint hypermobility and get really bad brain fog and also have chronic fatigue which often means I have to stay in bed as unable to stay awake after any exertion or activity which is quite disabling in itself.
Sorry this is so long....I also have ADHD and OCD and write as I speak so all my posts end up long and rambling lol.
Thank you for enduring this long post if you have made it this far lol.

I look forward to hearing from others and gaining any help or advice I need but I am also hoping that I may also be able to help others by joining in on your posts in the future. X


  • Tra7cyTra7cy Posts: 30Member Connected
    Hi, thank you for your post, I've been thinking of trying to get a social care package as my disabilities are getting so debilitating last couple of weeks, could you please tell me how I go about getting started. I have RA, osteoarthritis,joint hypermobility, L5 pars defect, COPD, IBS and mental health problems and other bits and pieces also need to move to a ground floor flat, any help would so be appreciated xxx
  • poppy123456poppy123456 Posts: 12,719Community champion Disability Gamechanger
    Tra7cy said:
    Hi, thank you for your post, I've been thinking of trying to get a social care package as my disabilities are getting so debilitating last couple of weeks, could you please tell me how I go about getting started. I have RA, osteoarthritis,joint hypermobility, L5 pars defect, COPD, IBS and mental health problems and other bits and pieces also need to move to a ground floor flat, any help would so be appreciated xxx

    As for moving to a ground floor flat then this will depend on whether you rent from a social housing or privately rent. If it's social housing then have you looked at a home swap?

  • poppy123456poppy123456 Posts: 12,719Community champion Disability Gamechanger

    I've read through your post and it's not clear me exactly what you need help with. I think you're asking how to set up direct payments? i'm sorry if i have that wrong.  Do you have a personal budget from your local council? If you do then you can choose what to do or how to receive it.

    You can ask the council to either:

    • manage your personal budget for you
    • pay the money to another organisation – such as a care provider
    • pay the money directly to you or someone you choose – this is known as a direct payment
    If you choose the direct payment option then there's other things to consider too. For this you'll need to have insurance for your home called business insurance. Then you need to employ a PA, produce wage slips,  pay their wages and pay HMRC all of this can be extremely confusing for someone who's never done anything like this before.

    Therefore it's a lot easier to ask payroll for help, this company will advertise for a PA for you and contact you when someone applies for the job, you then make arrangements to meet the PA to talk about what care you need etc. You then pay payroll for their services through the direct payment. Wage slips, time sheets need to be kept for when your local council request them to check your spending the personal budget correctly.

    As i said i'm not sure if i read your question correctly but if i have, i hope this helps a little.
  • HelenD001HelenD001 Posts: 5Member Listener
    I'm sorry for the confusion.
    I wrote this post as my welcoming post and I was trying to give a description of what my major health problems were and why I had joined this group.
    I had been trying to get a social care package set up through direct payments for over 2 years and I had only been sent your details last week and when I applied to join this fantastic site it was after I had a home appointment with my social worker (whom I had given up on after not having any help or contact from as it had taken me from last July until last October to get her to contact me and then nothing since).
    In between the time it took me to join this site, I had a visit 2 days ago from a lady from my council's independent living team and also a lady from a local Care Agency who were prepared to take me on their books starting from next Monday and so I didn't need to ask for help in my first post as miraculously it seems I may actually be about to get the care I should have been getting since 2016 onwards. 
    I will have lots of other questions tho as the social worker and lady from the council had said that they were also going to refer me for an assessment to see if I would qualify for free social care as most of my needs were to do with physical health problems and my condition fluctuates quite a lot.
    When the lady from the council came to my house 2 days ago though she made no mention of this and was trying to find ways that I would be able to afford to keep my direct payment care package going from April onwards when I have been informed my weekly contribution will go from £48 to £76 as the council has new changes being implemented which mean that because I do not receive overnight care they are allowed to count £28 extra from my PIP money into account when deciding how much I have to pay for my social care....even though I have pointed out that the DWP do not state if you are getting money for overnight care or not included in your PIP payment.
    So from April onwards I will have to cancel my social care package anyway...although through no fault of my own it will have taken over 2 years for my care package and direct payment plan to be arranged and set up so I have been advised to get the most out of my care package of 9hrs a week between now and April.
    Just wondering if anyone knows more about whether I should be able to qualify for free social care because my care needs are because of physical health problems etc?
     Sorry this is so long again.
    I don't know if this will make sense to you Poppy123446 but thanks for replying to my initial post.

  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Hi @HelenD001, and a warm welcome to the community! 

    I moved your initial post on your wall into a new discussion so more of our members would see it, apologies for any confusion. I'm so sorry to hear that it's taken so long for things to be put in place for you, but glad that things seem to be on the right track now. Social care isn't something I have a lot of knowledge about myself, but we have some brilliant community members who will hopefully be able to help you out with your questions. Glad to see you've had a chat with @poppy123456 already!

    Do keep us updated, and I hope today is as kind as possible to you!
  • poppy123456poppy123456 Posts: 12,719Community champion Disability Gamechanger
    For the personal budget, it's about what your local council's budget is and once you've been assessed they'll make a decision as to whether you need to contribute towards that care. A lot of people have to make some contribution and PIP is there to help towards the extra cost that your disability causes. Unfortunately, free social care is very few and far between because of lack of funding for almost all local councils.

    I'm really not sure what your other options are at this point, i'm afraid other than to pay towards the cost of the care that you need.

    I know i'm moving away from your reasons for posting but may i ask what other benefits besides PIP that you claim? and what award of PIP do you currently have?  I'm assuming that you don't work because of your disability. Do you live alone or with a partner that works? I really just want to make sure that you're claiming everything you're entitled to.

    If you don't want to give that information out on the forum then i'd advise you to get a full benefits check from an advice agency near you.
  • HelenD001HelenD001 Posts: 5Member Listener
    Hi, thanks for replying.
    I was on income support and incapacity benefit for many years until I was changed over to ESA support group (I think that is the one...I know I do not have to go to any meetings or anything etc. I was on the Severe Disablement Payment also which I am still getting I think.
    I am on PIP enhanced for both and I live alone and have no.one who is able to be a carer for me which is why my gp referred me to an Occupational Therapist after I asked her to so that I could see if I could have any aids around the house etc. I finally saw an OT in September or there abouts in 2016 and she referred me to adult social services as a vulnerable adult needing help as I wasn't coping and not able to look after myself or my house or eating properly and up until today that is still the case but I am hopeful that I will finally start getting the help I need but I may only be able to afford it until April and then I will go back to being a vulnerable adult again from what I can make out about the massive increase I will then have to pay.
  • poppy123456poppy123456 Posts: 12,719Community champion Disability Gamechanger
    Ok, so you're claiming the Severe Disability premium (not severe disablement) on top of your ESA because no one claims carers allowance for you and you live alone. That's good, i was just checking you're claiming what you should be and it seems like you are. The SDP is also paid to help you with the extra cost of living alone and being disabled. This and the PIP is most likely why you have to pay something towards the care you're receiving, sadly.
  • HelenD001HelenD001 Posts: 5Member Listener
    Hi, yes I think it is still the SDP that I'm receiving. I didn't know anything about it until my friend and my daughter had PIP and my daughter was automatically given it and as I was on Income Support at the time I should have had it automatically as well but it was a year or more after being awarded PIP that I had rung to ask why I wasn't receiving it and then they sent me a backdated payment.
    Yes...as I live alone and have no carer or anyone claiming carers allowance for me then I pay more than I would if I had a friend or partner as a carer etc.
    I spoke to the lady from the council who is from the independent living team, who has helped me get this Care Agency to start on Monday and she said she was in a meeting this week and she had been told that the only payments they take into account when deciding your personal payment are your rent or mortgage or bedroom tax and I think any council tax you may have to pay and then your water rates and I can't remember if she said another one thing and I asked her what about any extra things I need to pay for because I am disabled like I need a mobile phone with me at all times and I need to pay a monthly fee for my food to be delivered and they don't take into account other things I also need to buy because of my other health problems etc which I had tried to get them to take into consideration.
    From what I can gather, things are going to get a lot worse from April onwards as costs are going up massively and they are facing more and more cuts.
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